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Multiple Sclerosis Message Board


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Hello everyone,

I'm new here, been visiting another board too, but I thought I'd check with you all to see what you think I should do next?

Let me give some background (this may be long, sorry):

I'm 33, mom of 3, married, fairly stressful job, work long hours, night shift, but really, I don't ever feel so stressed that I can't handle it - I'm a pretty calm person until you really upset me :).

I've had headaches nearly every day of my life since I was young - I take ibuprofen like candy, switching from time to time to acetaminophen, and even occasionally aleve. Sometimes it'll dull the headaches, other times it won't. Sometimes the headaches become migranes. I have prescription meds for that. For the headaches, I've been put on blood pressure meds (that lowered my BP and pulse too much, had to come off), then tried Topamax (which did work for awhile) and now, Lexapro (for depression) that doesn't help at all, period - not even for depression - I notice no change in my mood or my stress level after months of taking it.

A couple of months ago, the headache changed - I woke up one morning with this awful pain behind my right eye that was terrible. The "headache" was general forehead/temple area, but the pain behind my eye was the worse, and it was all connected. This headache lasted for a grand total of 3 weeks and 5 days - nothing helped it, not the OTC pain relievers, not Butalbutol that my MD tried, not an injection of Toradol, they gave me Lortab and phenergan, and nothing helped. I would wake up in the middle of the night aware of this pain, I would try to go about my day with this pain, it was present, 24 hours a day. My MD never really seemed all that concerned by it, but did reluctently refer me to a Neuro doc. (I waited 3 months for an appt.)

During this time, my vision would occasionally blur, one eye at a time, but never limited to just the right side, it would occasionally happen to the left side. It didn't last long, usually just a few minutes, then resolve on it's own.

The headache finally did go away. It came back about a month later, this time, centered over my left eye - same situation, but only lasted a week or so.

During this time, I noticed other things too - I started with my lips feeling numb (right side) - first just the bottom lip, not completely numb, almost heavy, tingly feeling - I could touch it and feel my fingers, but it just felt funny. Then, my chin, kind of center, under my lips. Occassionally very brief tingling to the right side of my face, never the left.

I had a couple of occasions (not long lasting, just individual occasions) of feeling week (mostly to the left side but I'm left handed, so I might notice it more) - I have a 3.5 year old son, and there have been times where I absolutely could not lift him even with him jumping to help. My 12 year old can pick him up with no problem... Once, I couldn't lift my backpack - tried to lift it, and just couldn't.

That's the sum total of "new" things I've noticed. Now, a history.

I've had (for quiet awhile - not really sure how long, to be honest) very very poor balance. I wobble (have been called a weeble) a lot. If I stand from a sitting position, I sometimes will topple off balance and have to grab hold of something. Truthfully, this is worse on waking - when I first wake in the AM, I literally can't walk without falling over. When researching MS, I found some tests that can be done my Neuro - and did them myself. The heel -to- toe walking thing- can't do it - can't lift one foot to place in front of the other without falling over. The Romberg thing (standing with feet together, eyes closed) - can't do it - not even with eyes open - if I stand still with my feet together, I topple over after just a few seconds.

Other things - I will occasionally get a hand tremor (again, mostly left, but left handed) when I'm trying to do something - like write. It's not constant, it just appears out of the blue. It happened one day when I was signing something in front of a Dr. and I pointed it out - his response? I'm stressed? Really? Hmmm.

I'm always fatigued - can sleep morning, noon, night. I've been known to sleep for 12 hours, then wake up and want a nap later. Sleeping too much? Not really - when I cut it back and sleep 8 hours or 7 hours, I still feel the same thing - always want to sleep.

I hurt, all the time. My neck and shoulders, terrible pain. My legs hurt. My hips hurt, and sometimes my hands and feet hurt.

My feet, when they get cold, never get warm, to the point of having to blow them with a hairdryer to get relief.

The other day, I was frying chicken, and accidentally stuck my left hand fingers into the hot oil. I didn't know it until I pulled them back out (was putting a piece of chicken into the oil) and noticed that they were red and oily. I showed my husband, washed them off and moved on - never felt pain. I can't say that they were numb, I just didn't feel it.

My hands fall asleep when I'm sleeping, all night long, hands fall asleep, have to reposition. My legs fall asleep if I sit down for too long.

Sometimes my legs will just jerk, by themselves - like little muscle spasms, but they'll go on for hours, no matter what I do. And a lot, at night, I have terrible charlie horse cramps.

Now - Neuro visit:

Really no noticible difference with most of tests - though she did do a lot of frowning and asked if my vision was really bad when examining my eyes. She had me walk heel-to-toe, but didn't comment with my difficulty. During the exam, I noticed, when she tested muscle strength of my legs - my left leg was pretty good - she'd push on it, but it didn't move much, but my right leg would yield and then bounce back. She repeated the test a couple of times and kept moving from one leg to the other.

She ordered and performed an EMG and a nerve conduction test - and said the results were fine.

She sent me for an MRI of my brain and C-spine - and MRI of brain was clean, C-spine showed a slightly bulging disc at c6-c7 with mild spinal stenosis. I haven't been back to see her since then, but I was able to read the radiologist report.

I missed my last appt accidentally, overslept, and now, it'll be September til I can get back in. I don't know what to think, but I'm worried non-the-less. My gut tells me that this is MS - I can feel it - but the test (MRI) doesn't support it. What do you all think - what should I expect next? Does it sound like it could be MS to you? I know - self diagnosis isn't good but I can't explain the almost positive belief I have that this is what it is. I'm not particually scared over the diagnosis - I know it's not good, but I think the more fearful thing is to not know.

Give me suggestions/feedback please?

Thanks,

Stacie





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